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Understanding Autism in
the Context of Screening:
Where Do We Go From
Here?
Ann M. Mastergeorge
CIHS/First5 Special Needs Project Consultant
UC Davis/M.I.N.D. Institute
Overview and Objectives
1. To identify typical development and atypical
early indicators of concern for autism-risk.
2. To understand best practice guidelines for
screening for at-risk behaviors/autism.
3. To establish rapport and trust with families in the
screening process.
4. To develop consistent referral pathways for
children with autism risk in screening.
Overview and Objectives
1. To identify typical development
and atypical early indicators of
concern for autism-risk
2.
To understand best practice guidelines for
screening for at-risk behaviors/autism.
3.
To establish rapport and trust with families in the
screening process.
4.
To develop consistent referral pathways for children
with autism risk in screening.
Key Developmental Milestones
First Signs, Inc. (2004) Key Social, Emotional, and
Communication Milestones for Your Baby’s Healthy Development
 4 MONTHS
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 6 MONTHS
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Follow and react to
bright colors,
movement, objects
Turn toward sounds
Show interest in faces
Reciprocal smiling
Relates to others with
joy
Smile often
Coos or babbles when
happy
Cries when unhappy
Key Developmental Milestones
 9 MONTHS
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 12 MONTHS
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Smile/laugh while looking
at you
Exchange back and forth
sounds
Exchange back and forth
gestures: give, take,
reach
Use repeated gestures
(give, show, reach, wave,
point)
Play peek-a-boo, patty
cake, other social games
Making sounds and single
word approximations
Turn to person when
his/her name is called
Key Developmental Milestones
 15 MONTHS
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Many back-and-forth
smiles, sounds,
gestures
Uses pointing or
“showing” gestures to
gain attention to
something of interest
Uses different sounds
to get needs met and
draw attention to
interests
Use and understand at
least three words
(“mama”;”dada”; “byebye”; “bottle”
Key Developmental Milestones
 18 MONTHS
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Use lots of gestures
with words (e.g.
pointing and says
“want juice”
Use lots of consonant
sounds in single word
approximations/words
Uses and understands
at least 10 words
Shows/knows the
names of familiar
people or body parts
Engage in simple
pretend play (feeding a
doll, putting doll to
sleep)
Key Developmental Milestones
 24 MONTHS
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Pretend play with more
than one action (feed doll
and put doll to sleep)
Use and understand at
least 50 words
Use at least two words
together (without imitation
and repetition) and in a
way that makes sense
(e.g., “want juice”)
Enjoy being next to
children of same age,
show interest in playing
with them, giving toy to
another child
Look for familiar objects
out of sight (when asked)
Key Developmental Milestones
 36 MONTHS
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Enjoys pretend play
(play different
characters talking for
dolls or action figures
Enjoys playing with
children same age
Using language to
convey thoughts and
actions (“sleepy, go
take nap”)
Answer “what,”;
“where”, and “who”
questions easily
Talks about interests
and feelings about the
past and future
Common Presenting Features of
Autism Spectrum Disorders
From First Signs, Inc. (2004) Key Social, Emotional, and Communication
Milestones for Your Baby’s Healthy Development
 Unusual Stereotypic Behaviors
 Sensory Aversions
 Physiological Concerns
 Other Concerns
Unusual Stereotypic Behaviors
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Little or no eye contact
Does not respond to name
Has a language delay
Does not share interest in
object or activity with a
preferred adult
Displays rigidity and gets
stuck on certain activities
Expresses insistence on
sameness and resistance
to change
Inappropriate play or
behavior demonstrated
Tantrums easily
Unusual motor behaviors
or motor planning
Odd hand and finger
mannerisms
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Lines up toys or objects in
obsessive manner
Lacks ability to play with
toys
Prefers to be alone
Likes to spin self or
objects
Uses repetitive words or
phrases (echolalia)
Displays self-injurious
behaviors
Acts as if deaf
Lacks normal fear
Displays and flapping
and/or toy walking
Rocks or bangs head
Arches back
Sensory Aversions
 Over-or-under reactive sensory
input
– touch, sound, taste, sight, hearing
 Over-arousal and regulatory issues
 Difficulty processing sensory
information
Physiological Concerns
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Large head
circumference
Regression or loss
of skills
Low muscle tone
Frequent ear
infections
Difficulty sleeping or
unusual sleep
patterns
Dysmorphic
features

Frequent
gastrointestinal
issues (reflux, stomach
pains, diarrhea, constipation)
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Very picky or
unusual eating
habits
Rigid preference for
certain foods (dairy,
gluten)
Other co-morbid
disorders (mental
retardation, seizures,
hyperactivity, immune
dysfunction, anxiety,
depression, OCD, etc.)
Other Concerns
 Sibling of a child with autism
spectrum disorder
 Familial presence of other
warning signs
The Basics of Autism
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Onset during first 3 years of life
Chronic lifelong course
Male:female ratio = 4:1
Underlying neurological dysfunction
Genetic factors in etiology
Spectrum of severity
Spectrum of Autism Severity
 Kanner’s Description
– Leo Kanner (1943) classic paper
– Description of 11 children with previously
undescribed syndrome
 Characteristics
• Inability to relate to others
• Failure to use language to convey meaning
• Obsessive desire for the maintenance of
sameness
• Anxiety
• Congenital onset
• Co-morbidity
 Observations to empirical support
Increasing Prevalence
 Autism, strictly defined
– 4-6 in 10,000 prior to 1980’s (Lotter 1967)
– 16-20 in 10,000 today (Chakrabarti & Fombonne
2001)
 Autism spectrum disorders
– 10 in 10,000 in 1990’s (Bryson et al 1988)
– 60-70 in 10,000 today (Chakrabarti & Fombonne
2001)
Clinical Features
 Five specific spectrum diagnoses
used by DSM-IV:
–
–
–
–
–
Autistic disorder
Asperger disorder
Rett disorder
Childhood disintegrative disorder
Pervasive developmental disorder-NOS
The Autism Spectrum
 Milder disorders
– Asperger syndrome
• Fewer symptoms, no language delay
– Pervasive Developmental Disorder-NOS
 Sub-clinical manifestations
– The broader autism phenotype in family
members
• Language delay
• Shyness, social reticence
• Rigidity, focused interests
DSM-IV Core Characteristics:
Criteria for Autistic Disorder
 Deficits in reciprocal social
interaction
 Impairments in verbal and
nonverbal communication
 Restricted, repetitive or stereotyped
behaviors and interests
Meeting Criteria For Autism
 Individual must demonstrate at
least 6 of the 12 symptoms
– At least 2 symptoms from the social
domain
– At least 1 symptom from
communication domain
– At least 1 symptom from the restricted
behaviors/interest domain
– At least 1 symptom must have been
present before 36 months of age
DSM-IV Social Symptoms
 Failure to use nonverbal behaviors
to regulate social interaction
– Eye contact, facial expression, gesture,
intonation, posture
 Impairments in peer relationships
 Lack of sharing interests and
attention with others
 Limited social-emotional reciprocity
DSM-IV Communication
Symptoms
 Delay in or total lack of
development of language
 Unusual language
– Echolalia, neologisms, pedantic speech
 Poor reciprocity, turn-taking in
conversation
 Limited pretend play and imitation
DSM-IV
Stereotyped/Repetitive
Behavior Symptoms
 Circumscribed interests-narrow in
focus
 Insistence on sameness,
nonfunctional rituals and familiar
routines
 Unusual motor
behavior/mannerisms
 Odd toy and object use, focus on
sensory features; preoccupation
with parts of objects
Since Kanner: What Do We
Know?
 Autism is a Spectrum Disorder
 Autism Spectrum Disorders are Not
Rare
 Autism is a Developmental Disorder
 Autism is a Neurodevelopmental
Disorder with a Biological Basis
 Autism Can be Identified Early
Autism is a
Spectrum Disorder
 Range of potential manifestations
• addition to DSM-IV Asperger syndrome
diagnosis
• Individuals with normal intelligence without
marked impairments in structural language
• Individuals with severe mental retardation
with autism
 Complex diagnostic features and range
of manifestations
Autism Spectrum Disorders
Are Not Rare
 Increase in prevalence
– 3-4 times higher than suggested
in 1970s
– 1.5 times higher than thought in
1980s and 1990s
– Proposed explanations:
•
•
•
•
Better identification
Sensitive diagnostic tools
Broader classification systems
Environmental factors
Autism is a Developmental
Disorder
 Accurate diagnosis of autism required
significant knowledge of typical
development in the following areas:
social, communication, cognitive
skills, and play skills.
 Understanding developmental
profiles: must know what is typical for
development and atypical for
development at any age.
Autism is a Neurodevelopmental
Disorder with a Biological Basis
 Genetic factors
• Recurrence risk for autism after the birth of
one child with disorder is 3-6%
• Concordance rate for autism in monozygotic
twins is 60% (and up to 90% when social
and communication abnormalities included)
• Genome projects and molecular genetic
studies
 Broader Phenotype factors
 Organic Brain Disorder
• fMRI, MRI studies demonstrate: increased
head circumference, brain volume, brain
region deficits
Autism Can Be Identified Early
 Most common initial symptom reported
by parents is delayed (or abnormal)
speech development
 Social-communicative abnormalities in
the first and second year of life:
•
•
•
•
•
Eye contact
Social referencing
Imitation
Orientation to name
Shared attention and affect
 Early recognition and identification of
autism-->early behavioral markers of
autism
Overview and Objectives
1.
To identify typical development and atypical early
indicators of concern for autism-risk
2. To understand best practice
guidelines for screening for at-risk
behaviors/autism.
3.
To establish rapport and trust with families in the
screening process.
4.
To develop consistent referral pathways for children
with autism risk in screening.
Key Screening Questions
 How can sensitive information be shared
with families when concerns arise during
the screening process?
 What are ways to remain supportive and
family-centered throughout the screening,
child study team, referral and linkage
process?
 What strategies, techniques and tools are
available as resources?
Decision Tree Areas of Focus
Screening Results
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Screening results
are consistent with
typical development.
No signs of
developmental
delays or risk
factors identified.
Screening results
are consistent with
typical development;
however, presence
of risk factors.
Screening results
indicate a possible
delay or disorder.
Risk factors may be
identified.

Routine monitoring

Referral for services and
supports & heightened
monitoring

Assessment, referral for
services and supports as
needed, & heightened
monitoring
Building on What We Know: The
Critical Role of the Screener
 Introduces the family to the Special
Needs Project
 Establishes a relationship with the
family
 Gathers information about the family
 Opens the door to services and
supports
 Sets the tone for follow-up and follow
through on recommendations
Best Practices for the Process
 Work with families during screening
 Inform families about the screening results
 Work with families to decide on possible
services
 Support families in accessing services
 Link families to services
Best Practices (cont.)
 Follow up to see if services were accessed
 Provide ongoing support throughout the services
 Support the family in coping with identified concern
 Monitor services for the child
 Monitor and assess the need for additional services
Integrating Infant Family & Early
Mental Health Approaches
 Relationship-based approach to
services.
 Strength-based approaches to
services.
 Parallel process: modeling a
supportive relationship.
 Reflection with the family.
“ Parents and other regular caregivers in
children’s lives are “active ingredients” of
environmental influence during the early
childhood period. Children grow and
thrive in the context of close and
dependable relationships that provide love
and nurturance, security, responsive
interaction, and encouragement for
exploration. Without at least one such
relationship, development is disrupted and
the consequences can be severe and long
lasting. If provided or restored, however, a
sensitive caregiving relationship can foster
remarkable recovery”
From Neurons to Neighborhoods, National Research Council and Institute
of Medicine (2000, p.7).
Integrating Infant Family & Early
Mental Health Approaches (con’t)
 Infant mental health encompasses a continuum
of approaches in working with young children
and their families.
 Pyramid of three approaches:
– Promotion of healthy social and emotional
development
– Prevention-intervention of mental health
difficulties
– Treatment of mental health conditions in the
context of their families
Pyramid Promoting Healthy Social
and Emotional Development
Treatment
Prevention-Intervention
Promotion
Promotion of Healthy Social and Emotional
Development

Provide information about social-emotional
development in the context of caregiving
relationships.

Disseminate information about early
foundations for school readiness and apply
examples to their children.

Talk routinely about social and emotional
milestones as part of developmental
anticipatory guidance.

Integrate infant mental health concepts into
trainings for personnel working with young
children and their families.
Prevention-Intervention

Screening and assessment of social and emotional
development as part of early identification process

Carefully listening to families to help them identify, clarify, and
address issues that may be affecting the developing
relationship with their child.

Working with community mental health and public health
providers when there is concern.

Assisting parents/caregivers to understand and respond
sensitively to the cues the child gives.

Supporting families as they increase their coping skills and
build resilience in their children.

Consulting with parents through relationship-based practice to
promote the parent-child relationship.
Treatment
 Assisting eligible children to access mental
health providers for appropriate diagnostic
treatment services within the family context.
 Maintaining collaborative relationship
between the parent/caregiver.
 Creating or adapting models for crossdisciplinary work between mental health and
early intervention providers.
Overview and Objectives
1.
To identify typical development and atypical early
indicators of concern for autism-risk
2.
To understand best practice guidelines for screening for atrisk behaviors/autism.
3. To establish rapport and trust with
families in the screening process.
4.
To develop consistent referral pathways for children with
autism risk in screening.
Collaboration with Families
Infant mental health defined as developing
in the context of family:
“the developing capacity of the child from birth
to age 3 to experience, regulate and express
emotions; form close and secure interpersonal
relationships; and explore the environment and
learn--all in the context of family, community,
and cultural expectations for young children.
Infant mental health is synonymous with healthy
social and emotional development.” (From
ZERO TO THREE)
Family/Professional Collaboration
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Shared goals: promotes relationship in which family
members and professionals work together to ensure quality
services for child and family.
Mutual respect: recognizes and respects knowledge, skills
and experience that families and professionals bring to the
relationship.
Trust: development of trust is an integral part of a
collaborative relationship.
Open communication: facilitates open communication so
families and professionals can feel free to express
themselves.
Culturally sensitive: creates an atmosphere in which
cultural traditions, values and diversity of families are
acknowledged and honored.
Negotiation: essential in a collaborative relationship.
Mutual commitment: brings mutual commitment of families,
professionals, and communities to meet the needs of
children.
Bishop, K. (1993). Family/professional collaboration for Children with special health needs and
their families.
Family/Professional Collaboration
Shared Partnership
“If we are to be successful with families,we
are going to need to re-orient as
professionals. We are going to need to
look to parents as leaders, parents as the
experts, parents as the bosses. We are
going to need to ask them to join us
cooperatively as equals in this partnership
so that we create a reality that matches
what all of us want to see.”
Collaboration with Families
 Effective skills and strategies:
– Building relationships
– Meeting with infant/child and parent together
– Sharing observation of infant’s/child’s growth
and development
– Helping the parent find pleasure in the
relationship with the infant/child
– Allowing the parent to take the lead in the
discussion
– Identifying capacities that parent brings to
care of infant/child
– Remaining open, curious, and reflective
Overview and Objectives
1.
To identify typical development and atypical early indicators of
concern for autism-risk
2.
To understand best practice guidelines for screening for at-risk
behaviors/autism.
3.
To establish rapport and trust with families in the screening process.
4. To develop consistent referral
pathways for children with autism
risk in screening.
Core Concepts that Guide Screening,
Diagnosis and Assessment in Autism

DSM-IV is current classification standard for
establishing diagnosis of ASD.

Early identification is essential for early
therapeutic intervention and leads to a higher
quality of life for family and child.

Informed clinical judgment is a required element
of a screening, diagnostic and assessment
process.

Accurate screening and assessment requires
collaboration and problem solving among
professionals, service agencies and families.
Core Concepts that Guide Screening,
Diagnosis and Assessment in Autism

An interdisciplinary process is the recommended means
for developing a coherent and inclusive profile for an
individual at risk for or diagnosed with ASD.

From screening through intervention planning, the
evaluation process must be family-centered and culturally
sensitive.
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From time of screening--timely referral and
coordination of evaluation and ongoing assessment
enhances outcome.

Rapid developments in the field require regular review of
current best practice procedures and up-to-date training.
Best Practice for Screening for ASD
 Autism can be identified in very
young children.
 Screening for ASD should be
conducted in conjunction with routine
developmental surveillance.
 Because parents are the experts
regarding their children, eliciting and
valuing parental concerns is
imperative.
Screening Instruments for ASD
 Screening tools specific to
ASD:
– The Checklist for Autism in Toddlers
(CHAT)
– The Modified Checklist for Autism in
Toddlers (M-CHAT)
– The Screening Tool for Autism in TwoYear-Olds (STAT)
– The Stage 2-Pervasive Developmental
Disorders Screening Test (PDDST-II)
Screening Exemplar: M-CHAT
 M-CHAT (Robins et al., 2001) is 23-item
checklist designed as a screen fro ASD at
24 months of age.
 Form consists of yes/no format that
parents fill out.
 Spanish translation available.
 Demonstrated validity in identifying the
majority of children with ASD and
developmental delay at 24 months.
Screening Exemplar: M-CHAT
 Sample items from M-CHAT
– Does your child look at your face to check
your reaction when faced with something
unfamiliar?
– Does your child ever use his/her index
finger to point, to indicate interest in
something?
– Does your child ever bring objects over to
you (parent) to show you something?
– Does your child respond to his/her name
when you call?
Autism Can Be Identified Early
In Very Young Children

Advances made in identifying behavioral
indicators as well as atypical development in
children less than 2 years of age who are later
diagnosed with ASD.

Recent focus on developmental precursors of
communication, language and social
development in the first two years of life

Children at risk for autism generally have
failures of joint attention, nonverbal and
preverbal communication, social reciprocity,
affective understanding, and imitation.
ASD Screening in Conjunction with
Routine Developmental Surveillance

Best practices recommend that all children be
screened specifically for ASD at ages 18 and 24
months.

Clinical signs or “red flags” exist that can help
identify children at risk for delay and/or ASD.
Indicators include:
– No babbling by 12 months of age
– No back and forth gestures such as pointing,
showing, reaching, waving by 12 months
– No words by 16 months
– No two-word meaningful phrases (does not
include imitation or repetition) by 24 months
– ANY loss of speech, babbling or social social
skills at ANY age.
Elicit and Value Parental Concerns
 All professional encounters with young
children should be viewed as an
opportunity to elicit developmental
information.
 Advantages (Glascoe, 1999):
– Concerns are easy to elicit
– Inquiry is brief
– Does not involve challenge of eliciting skills
from young children
– Provides family-centered approach to
addressing problems
– Can facilitate a wide range of options
including parenting education, reassurance,
referral, or further screening or
developmental testing
Roles of Early Identification and
Screening for Referral
 Primary care physician
– Developmental surveillance
– Screening practices (e.g., M-CHAT)
 Role of Regional Centers and public
schools
– Early Start (funded by IDEA, Part C and
California state funds)
– Regional Centers
– Local Education Agencies (LEAs)
 Role of other Professionals
– Aware of common “red flag” indicators of ASD
– Know appropriate referral sources
Role of California’s Regional Centers
and Public Schools

California Early Start criteria: receive services if
meet at least one of the following criteria
(1) Developmental delay in either cognitive,
communication, social or emotional, adaptive or
physical and motor development, including vision
and hearing; OR
(2) Established risk conditions of known
etiology, with a high probability of resulting
in delayed development; OR
(3) At risk of having a substantial
developmental disability due to a
combination of risk factors
Role of California’s Regional
Centers and Public Schools
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Early Start : mandates that regional centers
and public schools’ local education agencies
(LEAs) together create “child-find” to locate
infants and toddlers eligible for early
intervention.
Regional Centers: offer screening services to
public to find children who qualify. Screening
instruments designed for detecting symptoms of
ASD, and “red flags” for atypical behaviors
Local Education Agencies: responsible for
infants and toddlers with low-incidence
disabilities
Family Resource Centers: provide parent
support, information and referrals
Referral of Child with Possible ASD
 Confusion surrounding referral
process--major barrier to screening:
– Need resource directory, contacts for
individuals and teams, referral process
explanation, etc.
 Next Steps:
– Conveying information to families
– Supporting Documentation for referral
 Where to Refer:
– California Medical Centers Regional
Centers (demonstrated expertise)
– School Districts
Contact Information
[email protected]
u
http://hcd.ucdavis.edu/faculty/mastergeorge/
mastergeorge.html
www.mindinstitute.org
Website Resources: General
Development
www.zerotothree.org
www.bornlearning.org
www.ccfc.ca.gov
www.cde.ca.gov
www.preschoolcalifornia.org
www.caeyc.org
www.childcareexchange.com
www.nccp.org
www.californiatomorrow.org
Website Resources: Autism
http://www.first5caspecialneeds.org
http://www.f5ca.org
www.firstsigns.org (Healthy development,concerns,
screening and referral process, early intervention for ASD)
www.autism-society.org
www.autism.org/contents.html
(Center for the Study of Autism)
www.autism.com/ari
(Autism Research Institute)
www.autism-resources.com
www.Autism.tvWebsite